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transition to adulthood

The morning before the last day and, right on cue, the buds are out for the first time this spring.

He won’t be 22 for a few more days, but because of the April break tomorrow is his last day in the School District. The week is devoted to community trips to his favorite places – movies, zoos, museums. The staff, like us, seems a little bewildered that this moment has finally arrived. It’s hard to focus on the administrative details and preparation for the next environment; we are grateful to have found a place that not only has meaningful employment waiting for him, but people who are looking forward to his arrival. We may have worked for this outcome but it is still something of a miracle to all of us.

Following the instructions.

There will be challenges, but they are not the kind we can see from here. I see glimmers of anxiety. Last night I asked him to fill out the simple application form for the job training program. he was busy drawing and cast me a sidelong glance, saying, “I’m not very cheery about this.” He complained while filling it out but, as ever, was meticulous about it. Earlier in the day he was putting together a truck given to him by a thoughtful classmate. I watched him pore over the instructions – how many people do you know who follow the instructions from the outset of an assembly project? These gifts, these skills, are integral to his thinking. They will serve him well, always, and will help him make a place for himself in the world.

He’s on a roll with drawings and decorating, and today the trains need Halloween prep. I never fail to marvel at the focus and precision he brings to these projects, which are totally his idea. Add to that he has positioned himself right in the middle of our own project of reorganizing part of the basement – we are working near and around him, going back and forth, calling to each other and generally making a racket. He is unperturbed. Add to this list of potential antecedents my request that he move part of his train set temporarily so that I can clean out and move a cabinet that holds various frames, craft supplies, toys and videos. I don’t really want him to see the things I intend to give away, but have already decided that I won’t give away anything he wants me to keep. We have finally learned to pick our battles.

I can tell he doesn’t want to move the train tracks out of my way, and I am prepared for him to declare that I am an Onion lady who is too full of organizing. I wait a while to let the request sink in and focus on something else. Then he materializes in front of me, holding a box of videos: “I’m too old for these.” They are Richard Scarry ABC and counting videos. They are my favorites. But I take them and set them aside with the other “give away” things.

Then he appears with another box of videos, classic Disney this time. “We have all of these on DVD, which is more efficient.” Then I realize that, rather than move the tracks or allow me to navigate around them (which I couldn’t – I’m such a klutz I would definitely step on them) he is carefully removing everything from the cabinet himself.

So while he was constructing Halloween decorations for his trains, he was also making decisions about growing up, and managing change and doing it all beautifully, meticulously, and offering up explanations along the way. A task that would have been frought with emotion and behavior management (and that in younger years I would probably have attempted in the middle of the night or while he was somewhere else) had evolved so peacefully I almost didn’t notice – until I realized that he was having an easier time parting with things than I was (you don’t want that 12-foot train puzzle that you put together a thousand times, really?).

Not so long ago I wondered if he would ever grow out of some things and I concluded at the time that it didn’t hurt to wait. It’s not always true that all things come to those who wait, but on this day it is. As I was reminded by him more than once this week, “Patience is a virtue, Mom.” True, that.

Ever since the 18th birthday earlier this spring, I’ve been in a state of emotional turmoil. It’s only a slight exaggeration. Now I try to make some sense of a teenager’s room that runs the gamut from Winnie-the-Pooh to Scooby Doo with everything in between. It’s a collector’s dream and a parent’s nightmare. I’ve learned the hard way that throwing the wrong thing out means I will be hounded eventually to replace it – it could be five weeks or 5 years from now, just long enough to make what cost me $1.99 in 2003 now cost $67.99 on Ebay today. I know parents who have purged their house of everything Thomas and Pixar to help their kids become adults but my problem is that I really am loath to replace Toy Story with the Man of Steel. To me, that’s just another kind of arrested development. More importantly, he’s not interested in that stuff – he sleeps soundly through superhero movies on a regular basis. He loves what he loves.

And the books. Which ones will he ever read? How can we know what will prove useful or interesting, just by waiting patiently for him to notice the ones placed where he sees them every day? To get rid of the easy readers seems mean, to get rid of the more advanced books seems pessimistic.

Will he look beyond the action figures to the books behind them? Maybe.

Downstairs are the bins of paperwork that requires filing or tossing – one for school, one for insurance, one for general ASD stuff, one for transition, one for keepsakes and artwork that show developmental progress, or the lack thereof. But I only end up weeding things out I know are redundant – I just don’t know when a school or a court will need to see what we have and I’m afraid to get rid of something that could be a key piece of evidence of … I don’t know. And every bin or toys or papers brings a flood of memories and emotions that don’t want to stay on the shelf where I keep them. I am trying so hard to focus on the future that sifting through the past seems like a bad idea just now.

So I guess I’ll stick with The Wizard of Oz and The Sound of Music – at least they are live action – and wait a bit longer for the moment when we can at least move some stuff up to the attic. And we will know soon enough what schools, doctors, agencies and lawyers require and then, maybe then, we can let go of at least some of the past.

Who thought this day up? Hallmark? Well, it’s a good excuse to sift through the photos, and it’s amazing how hard it is to find a photo that includes everyone that captures the spirit of our brood and still preserves some privacy. I think I found it.

Siblings of autistic children don’t have it easy, and we do our best to recognize their challenges and build some rewards into the process of accommodating the necessary quirks of life with autism. Remember my movie post earlier this week? Access to movies, screens and electronic devices like iPods is exponentially greater in our house than it would have been without autism (I think). We’ve made more trips to the beach, given more nods to everyone’s food preference (a special diet for one person demands more flexibility for everyone, sometimes), and we’ve tried, not always successfully, to give everyone the spotlight at time when they wanted it (sometimes they don’t).

The hardest thing so far is giving each child space from the others when they need it to create their own identity. Sometimes it’s difficult for ASD people with a developmental delay or cognitive impairment to see a younger child grow past them, as it were. And siblings are not always diplomatic in creating the separation that’s necessary for them to grow up. It’s hard to do and hard to watch; everyone involved experiences frustration, anger and hurt. It’s typical for all families to go through this, but as parents it is much harder to keep ourselves from intervening than we expected – we are so invested in the idea of inclusion that we have to remind ourselves that our children need to prepare for a life apart from each other. If we give them the space they need now, we hope the bonds they forged when they were young will stay strong after the angst of adolescence has passed. That’s the idea, anyway.

In a nod to the late Roger Ebert, I’ve assembled a list of movies and shows that can endure the repeated watching that results with having an ASD person in the family. This list is highly personalized – you may find the movies I love are the ones you can’t stand – still, I’ve tried to give a quick rationale for why I like or dislike each one. There is one universal truth: if you expose ASD kids to inappropriate language, they will repeat it – in public and loudly. SpongeBob Squarepants deserves a post all to itself. You’ll have to wait for that one. The Same goes for Finding Nemo. The jury is still out on Scooby Doo.

Inexplicably, we go through pro and anti-muppet phases and continue to have lengthy discussions about the “realness” of Muppets. The Muppets are also very useful in teaching about humor and jokes like puns – ASD kids seem to read the social cues of muppets better than in actual people.

So many people think this movie is too sad, but there is no greater depiction of the mother-baby connection in animated film. The pink elephants and the crows are also objectionable to some people, but that Casey Junior Train is an icon that endures. It’s what inspired the artist in our boy. For years he would set paper, crayons and paint in front of me and make me (and his teachers) draw it over and over – and then one day he did it himself.

The older the better – Ringo, James Carlin and Alec Baldwin if you can find them. At one point I wrote to Baldwin telling him he should make videos as Mr. Conductor in which he eats a variety of foods to model good eating habits – the single act of eating celery and carrots in the Magic Railroad movie changed our lives. No, he didn’t write back.

My favorite story about this movie: when we were doing cognitive testing, the examiner asked our boy who discovered America and the answer our boy gave him was, “Christopher Plummer.” Also, he drew the cathedral wedding scene using the characters from Scooby Doo.

We canceled our premium cable channels after he stumbled on this and became obsessed by both the sex scene and the transformation from man to beast. It did help us communicate at a key point in his development because we realized that references to the Wolfman occurred when he experienced digestive pain.

Both lists could go on forever, but these are the ones that come to mind without a trip to the movie shelf. If you’ve found anything good, helpful or just fun for older kids and teens please post a comment – we are always looking for more adult content that is not too adult, in terms of language, sex and violence.

I’ve had some brutal conversations recently, and one in particular yesterday left me speechless with indignation. Hard to believe, I know.

But I’m not speechless anymore.

I have been speaking with parents for many years, and in recent months the talk has turned, not surprisingly, to adult transitions for people with disabilities. It’s complicated. The kids are complicated and the system beyond the School District is complicated. There are multiple agencies that providing multiple, sometimes overlapping services. The eligibility criteria – now under revision by the Commonwealth – is maddening, placing undue weight on IQ scores. Kids with scores over 70 get far fewer supports (if any) after age 22 than kids with scores 70 and under. Just like getting typically developing kids into college, parents compare scores and experiences. That score, and how you access the social service system – through the Department of Developmental Services, the Department of Mental Health, Massachusetts Rehabilitation Commission and probably some agencies I don’t even know about yet – affects how we move through the system. We have learned that we can get conflicting answers on what to do and what is available from people working at the same agency. We knew it wouldn’t be easy.

What I did not expect is the juxtaposition of complacence and entitlement that emerged during these conversations. People tell me matter-of-factly that it is futile to negotiate and collaborate with the School District to better target support for a child but they follow it up with the expectation that, come age 22, the Commonwealth should be poised to provide full-time employment opportunities for the student emerging from the system. They are shocked to discover that this is not the case. While, in my experience, the Commonwealth makes no promises, they give the realistic expectation that students may have a chance for part-time work. People with an IQ under 70 may be eligible for additional support though day programs and group homes, but those with an IQ over 70 will likely get nothing at all, regardless of their ability to access the potential indicated by the score. The difference in what the state provides is determined to some degree by how families access the system and advocate for their disabled young adult. I am only just starting to sift through this information, so don’t quote me on my facts just yet.

The barriers to employment for adults with autism is all over the news, partly because there are so many high functioning autistic people out there that people can see the untapped potential they could bring to the marketplace. And yet I find myself yet again pushing back against the perception that an autism diagnosis presents some kind of unfair advantage in the school and social service system just because there happen to be so many people with autism coming of age at this point in history. And let’s be clear: they aren’t talking about people with IQs near 70. I find myself apologizing for the fact that my disabled child is the one slated to fall through the safety net because he is autistic – this is the conversation that sent me into orbit. The conversation in which the person whose child will get more support than mine feels cheated because my child is viewed as higher functioning when he is only differently disabled than hers. Is there such a thing as disability envy? Sometimes I think so. Contrary to popular belief, the autism label isn’t opening any doors for us; I’m pretty sure I can hear them closing.

There is no glory in needing or asking for help. There is no greater helplessness than knowing there are limits to what you can do for your disabled child, and knowing that you are going to have to go outside of your family to assure that they get what they need so that they will need you as little as possible as they – and you – get older. We do not want to let them go; sometimes just letting them go to school is tough enough. But one way of making this excruciating process bearable is trying to do things that help more children than just your own. I have said this part many times before: We have tried to advocate for our child with an eye toward building programs that help others like him but also toward building a school system that serves all children well.

But to hear from parents that the teachers are great but that nothing has ever really changed, that a child is not getting this or that even though it’s in the IEP but that’s just the way it is, that the high school is bad at this or the middle school isn’t addressing that, that the Commonwealth is a self-sustaining bureaucracy and nothing more and there’s nothing we can do about it – that just doesn’t match up with my reality.

Our School District has changed and is changing every day. My indignance comes from the sense that people are complaining about things that have been fixed, that our high school is better suited to serve our kids than it was 2 years ago and infinitely better than it was 5 years ago, that education is a partnership that requires communications and work inside and outside of school by all parties involved and that, most importantly, complaining is not the same as advocacy. Things are changing because parents are speaking up in ways that foster change – which doesn’t mean bitching over the phone or in the parking lot. It means calling a meeting when the District is not meeting the terms of the IEP, making sure the IEP addresses the needs of the child, and that the teachers and staff have the time and means to serve the child.

Here’s something else we accomplished: we created and funded an Education Resource library for parents and teachers to research specific disabilities.

I am driven to distraction by the perception that we can neither penetrate nor change the system and that the progress we have made in recent years in our own schools is invisible. People say to me with a straight face that it is a waste of time for them to try to change things in a school “because it won’t ever happen.” I know that the improvements to the program that their child is in were not an accident that happened while I was advocating for my own child – I asked for change, lobbied for it, called meetings about it, talked to the School Committee about it, got funding for it. And when other issues were brought to my attention, I did the same thing for programs that my child was not in. There are a lot of us doing a lot of work out here and we can’t take sole credit for that progress but it galls me to discover that some people think that parents and citizens have not fueled and contributed to substantive change at our high and middle schools in the last five years. There is always more work to be done but this is a moment where I feel the need to stand back and appreciate what we have accomplished so far. Within the last few years we have increased all of these supports:

therapeutic classrooms

school adjustment counselors

assistive technology

transportation for community inclusion

after school opportunities

community-school employment partnerships

small-group instruction

language-based instruction

behavioral training and support

And we accomplished it not because my child is has a certain diagnosis but because I – and many parents like me – put in the time and energy to advocate for changes that would make our schools better not just for our kids but the kids who come after ours.

So many parents face bigger hurdles than I do – and some of their hurdles are in my future. They work harder and better to accomplish things I haven’t even dreamed of yet. Whatever work I have done pales in comparison to theirs. I know that we will benefit from their dedication, wisdom, persistence and tenacity and I don’t ever want to them to think I take their work for granted; I am finding out just how many people do.

Last weekend I was so hot and so worried I lost 5 pounds and did not even notice until now. Suddenly I’ve lost my taste for sweets.

Week seven underway and we are all tired of our quiet house. I told myself at the outset that I would not spend the summer waiting for the boy to come home, and for the first six weeks I made good on that promise in some ways but not others. I spent time with my other kids doing things they wanted to do and sharing with them new experiences that are interesting to me. I promised to have drinks with lots of people to help pass the time but I didn’t make good on that one. I said I would sort through his drawings and keep the best ones, but I can’t go anywhere near that mountain of paper with any kind of gusto and certainly not a shredder.

But the biggest elephant in the room right now is that this adventure is supposed to prepare us for more separations in the future, and even though I should feel better about age 22 now than I did, I still can’t envision a life without this person under my roof. We were not prepared for the scale or the depth of the adjustment at home; the house is neater, cooking is simpler, and car rides are quieter, but nothing is better without him here (which is not at all surprising). I have to remind myself that this particular kind of absence isn’t what camp was about – that long distances and separation over several weeks is not the model we are shooting for, that camp is only an experiment and not a template for his adult life.

We still have lots of data to collect before we really know what we have learned, and the surprise at this point is that most of the learning has been about ourselves and not him. But a few things are certain – we are all stronger, smarter and better prepared for the next steps we take toward independence, and that we still need to address what independence really means within the structure of a family.